As much as I try to prepare my mind – and heart – for the reality of the rollercoaster that comes with a congenital heart defect, I still find myself struggling.  I knew – I wrote about the fact – this heart surgery wouldn’t just magically fix everything.  Kiran is not going to just start eating like a normal kid, he’s not going to start crawling tomorrow ….

Feeding.  This has been a major, major source of frustration for me.  His entire life.  There must be something very primal about a mother’s ability to feed her baby, because I have probably cried just as many tears over feeding issues as I have over the very scary heart stuff.  He fed really well for a few days, and then he just…stopped.  He is back to either flat out refusing his feeds or only taking 10-20 ml by mouth.  Basically, we are right back to where we were before heart surgery again.

I don’t really know why.  I have my theories.  Teething.  I’ve cried wolf on that one a few times, but I honestly think there is a tooth coming any day now.  Aspiration.  When he is focused on eating, he does fine.  When he plays and messes and tries to spit his bottle out, I think the milk tries to go down “the wrong tube” and he coughs and gags and cries.  I plan to request a swallow study again – we see the pediatrician Wednesday.

I also plan to move forward with the feeding clinic evaluation at Childserve.  It can’t hurt, and I need a plan in place or I will go crazy.

I keep reminding myself of these things: Just because he now physically CAN (heart-wise) take a full bottle doesn’t mean he WILL.  It also doesn’t mean his mouth/throat muscles are strong enough to do so consistently.  It doesn’t mean he won’t be stubborn because he knows he will get full either way.  This will be a rollercoaster.  I have known that, in my head, from the beginning.  But it’s hard to not let your heart get carried away with your hopes for your child, especially when you see him finish half or more of his bottles a few days in a row.

Also, what a beautiful problem to have!  I never lose sight of that.  He is a survivor.  He rocked his recovery.  We are HOME, and we aren’t even at three weeks post-op yet.  Isn’t it amazing and wonderful that we are in a position that I can worry about feeds.  It doesn’t lessen the worry or the frustration – they are very real, and it is the reality we are living in – but it does help me keep things in perspective.  We are blessed with this boy.

And now we move to the lesser tough stuff.  Feeding.  Development.  Vision.  Feet.  Genetics.  All the things we had to put off until this surgery was over.  The journey continues, and it will forever.  This surgery was a big step – an important step – and a truly huge chapter change…but I have to remember this is still his story.  There are many more long, frustrating, joyful, amazing chapters to be written.

And I still can’t control a darn thing.

Except loving him and keeping perspective.  The first one is easy.  The second one, I am struggling with.

Kiran had his post op appointment with our local cardiologist today.  He looked and sounded great!  Pulse ox immediately read him at 100 saturation.  He got the last stitch taken out of one of his chest tube sites and got to wean some of his medications.

I stopped his ativan wean – and have given tylenol instead, to help with the transition – at 2 am this morning.  He seems to be doing okay, so I am hoping to not have to give him any more doses of that.  Dr. M. put his lasix back down to twice a day and thinks we should be able to get him off of that in a few months’ time.  Lasix dropping down means the med we were giving to help protect potassium (lasix makes him pee it out) can also be stopped.  This means we are on a much more manageable medicine schedule!  It also means in six months, he could potentially be down to just his acid reflux med and eye drops!  Big dreams!

We were told (again) that we no longer need to have Kiran on the pulse ox machine at home.  Kiran has been hooked to the pulse ox every single night since the day we brought him home from the hospital.  It is terrifying to actually think about putting him to bed without it.  But we have decided tonight is the night.  No more parental weaning.  Ripping off the bandaid.  Big changes!

He has backed off quite a bit the last 24 hours on how much food he has taken orally, but I think he had a mild case of constipation.  That seems to have corrected itself this morning, so I am hopeful he will continue to make good progress with eating.  We discussed a little bit today about a loose plan to eventually get him off the g-tube, but we will get further direction from our pediatrician and gi doctor.

We also learned today that Dr. Hanley himself called Dr. M to fill him in on the surgery in detail.  Dr. M said that never happens.  I continue to be incredibly impressed with Dr. Hanley’s level of care along with his incredible experience and skill.  We definitely made the right decision taking Kiran to Stanford.  He is doing so well with his recovery!

 

Kiran and I were just chatting about his upcoming birthday. I can’t believe he will be one in just one short month!

For those who know Kiran, he is a very social kid. I am not sure who he gets this from. In any rate, he really hopes a lot of his friends and family will join him two days after his birthday to walk (or run) in the Superhero Heart Run in Des Moines, October 23rd. 

http://www.superheroheartrun.com/

There is a $25 registration fee. Directly from the website: “Proceeds raised from this event will be utilized to provide support, education, research and create awareness for CHD, the most common birth defect worldwide. Families in Iowa will benefit directly through the programs and services provided by Help-A-Heart and Heart Heroes, Inc.”

It is because of events like this and generous people supporting these worthy causes that Kiran was able to have such a successful surgery and recovery process. But he is not cured. There is still no cure for CHD, and there is a great need for more research and greater awareness. It is one of the main reasons I write this blog (The other being, if I didn’t, I’d be in a psych ward somewhere right now.  I am only slightly joking.)

If you are unable to join us for the walk (Be sure when you register to join Team Keen on Kiran!), we will also be fundraising for this great cause.  You can contribute here:

https://www.crowdrise.com/keen-on-kiran/fundraiser/
Think of it as the best birthday gift you could give this sweet boy: 

I am sitting here, tears of joy and relief streaming down my face, for a reason most parents would find laughable (but not a heart parent – never a heart parent): Kiran just took an entire bottle by mouth.  135 mls. 

Prior to his surgical repair, he was taking 10-30 mls orally – more often than not, he was in the 10-15 ml range each feed. And he would be sweaty and tired, even after taking such a small amount. 

We didn’t do much oral feeding in the hospital. He wasn’t interested. We did enough to ensure he didn’t seem to be aspirating, but we mostly used the g tube to let him rest and heal. He has never eaten well in a hospital setting anyway. 

At the hotel on Saturday, he took 110 ml. I was blown away. Then he took 70 ml at his next bottle. Travel day was a little wonky yesterday – but so far today, he has done 100 ml, 80 ml, and now 135 ml. 

We have a long way to go. He still gets 3 bottles worth over 8 hours at night through his g-tube. We will have to figure out a good nutrition plan that he can handle. It’s all overwhelming for me right now – I will need to work with his pediatrician and GI Doctor and cardiologist to make sure we do all the right things for him. Especially as we approach one year of age, switch to whole milk, introduce more foods….

But man. This is a VICTORY!  And it is such validation for me. I was always so worried, especially with his feeding issues, that I was missing something. That maybe it wasn’t heart related at all, and I was failing him by not understanding the real problem. It seems it was heart related after all. It was an energy problem. And he’s ready to eat. 

And I’m just sitting here sobbing about it. ❤️

We are in the car on our way from Minneapolis to Des Moines. We flew bright and early from San Francisco.

I dislike the actual act of traveling anyway, and it becomes a lot more stressful with a precious baby boy who has to be lifted a certain way because he is still healing. So thankful the airplane portion is over.

Much like I lost it and sobbed once we heard from Dr. Hanley the surgery was a success, I found tears spilling down my cheeks on the plane ride as I looked at Kiran next to me. Going into this, we didn’t know what the trip home might look like. I was so relieved – overjoyed – to be bringing my baby home with us. 

We saw so much of Kiran’s normal personality yesterday. We took a couple long wagon excursions, and he loved it!  Time to dig out the wagon at home. I see lots of bundled up wagon rides in our future!

They started the wean on his Ativan at 9 pm last night. They went down on dose as a first step. He did really well!  He slept through most of the night – I was sleeping in the room with him again and only woke once with mild fussiness. Night and day difference from the night before. 

Hopeful my next post will be titled: “Busting Out of Here”!!!!!

We are still trying to get a handle on Kiran’s discomfort. He had a rough night – I was up comforting him often and didn’t sleep much.  During rounds, we decided to put him back on around-the-clock Tylenol, continue with the Ativan and follow a very slow weaning schedule, and add fiber to his formula to help him with his tummy issues. We will also try to feed him some yogurt today for his tummy. 

Depending on how all of that goes today – and if we can at least start weaning the Ativan tonight to see how he handles it – we may still be discharged tomorrow. It is also possible we will be here another day – or two – beyond that. We want to make sure his pain and discomfort is being managed, and ensure we feel comfortable taking over the management. 

Overall, he’s doing great. We are seeing more and more playfulness and plan to take him for a walk again this afternoon. He hasn’t had any more episodes of high heart rate, so it seems that was just a fluke. 

In some ways, I am so ready to bust out of here. In other ways, I am completely fine if we end up staying an extra day…or more. Like our new neighbors on the floor said: We want to go home, but we don’t want to have to come back!

We finally got a bed on the floor tonight!!!  Plan is to try to discharge on Friday and possibly fly home Sunday!